Australia’s Health Minister, Greg Hunt, has met with us (ME Australia) twice about the urgent need for biomedical research funding and updated treatment guidelines. Minister Hunt had a second meeting with recently with ME Australia, this time along with Prof Paul Fisher, head of microbiology at La Trobe University and Dr Heidi Nicholl, Emerge. https://meaustralia.net/2018/12/01/australias-health-minister-listening-to-people-with-me/
for context, Australia has a strong network of national, regional, and local support & advocacy groups. those groups allow all Australians with ME, to participate in the conversation. perhaps it would be more democratic, to allow the larger advocacy groups, who represent more than 6000 members, to negotiate with our national health minister, on our behalf. these groups allow open and free discussion on contentious issues, and often allow members to vote for their preferred outcomes. within these groups, there are many enthusiastic volunteers, with a breadth of knowledge and professional skills, who assist with advocacy. some of these organisations receive govt funding, and have the capacity to build a long-term relationship with the national health minister. the blogger known as "ME Australia", and many other australians with ME, have independently met with the national health minister. perhaps, collectively, those short meetings have helped give us visibility, and a photo opportunity. in many cases, we don't know the details of what was discussed, and what each person's priorities were. currently we have many private individuals approaching the national health minister, one by one, with mixed messages and priorities. access to the health minister is precious, and the outcomes will greatly affect the lives of ~200,000 Australians with ME. in the long term, it would be more effective and democratic, to have one/some of the larger advocacy groups, agree on our main priorities, and build a strong meaningful relationship with the health minister.
I agree. I find this approach frustrating. With access to the Minister so limited, it's plain common sense that Australian groups and individuals agree that the larger representative groups should be doing this critical development work.
I shouldn't really comment on the internal politics of Australian ME groups when I know so little, but there can also be problems with larger groups. Wasn't one of the larger groups supporting that video-game exercise trial that seems likely to do more harm than good? In the UK I think that the largest patient group is still Action for ME, and we know about the problems there. I've gone and commented, just after saying I shouldn't! Please note that I really don't know the differences between these Australian groups.
